A version of this post also appears on the End Well blog. I am honored to announce my participation as an eCaregiver Ambassador for The End Well Symposium, taking place December 6, 2018, in San Francisco, CA. It will be a “day of learning and connection as we engage with one another, across disciplines, to transform the end of life into a human-centered experience.”
When the person you love is diagnosed with a life-threatening — and often, quickly, life-ending — illness, it changes you. Plans for the future are no longer realistic. Trivial concerns are immediately forgotten and replaced by a new, painful reality that you only theoretically considered in the past. You find yourself in the unfamiliar and highly stressful role of care partner, consumed by the desperate struggle to save their life.
I was mesmerized by Patrick when we first met. Not only was he strong, handsome, successful, and funny, he also had the biggest heart — having spent his life being of service to others. He inspired me to be the best version of myself, and I had no doubt he was my person. In 2014, after a few years of dating, we began the search for our dream home where we planned to start a family. We had great jobs. I had found my “happily ever after.”
Or so I thought.
In the middle of the night, I woke up to the sound of Patrick’s voice echoing in our house. I followed the noise, only to find him sitting straight up on the living room floor, talking so loudly he was practically shouting. All that came out was jibberish. I called 911, and what followed was a nightmare.
While in a medically-induced coma, doctors discovered that Patrick had a mass in his brain. Within weeks he underwent a craniotomy which confirmed our worst fear: glioblastoma. I did not know much about brain cancer, but I knew GBM killed Patrick’s sister a decade earlier. A quick Internet search revealed that the average survival was 15 months after diagnosis. All the plans we had made for our future came to a standstill.
Patrick had an incredibly difficult course of treatment. He had uncontrollable focal seizures that resulted in bouts of postictal psychosis. During these episodes, the Patrick I knew and loved all but disappeared. Only eight months after his first seizure, Patrick was told that, if he continued treatment, he might have a year to live. This year of life would likely include more time in the hospital. Having spent five months as an inpatient where he was subjected to treatments that simultaneously sustained his life while also taking away so many of the things he once held dear, Patrick decided he wanted to go home.
In this moment, I took stock of what Patrick’s life had become. He had lost all of his independence: He was in a wheelchair, he could not be left alone because his confusion put him in physical danger, and he could not read or write. I realized that pushing him to carry on this way would be the most selfish thing I could do. Instead, with my support, Patrick courageously ended treatment and was given a prognosis of three to six months.
Shortly after entering hospice, Patrick and I married in a backyard ceremony. It was beautiful and perfect day. Forty-eight days after we vowed to love each other forever, Patrick died in my arms.
For me, the healing process has been slow and often isolating. As a 31-year-old widow, I found myself in the middle of an existential crisis as I confronted questions about my own mortality. I tried discussing my thoughts and fears with my loved ones, but I found that this topic makes most people excruciatingly uncomfortable.
This experience made me acutely aware of just how death-averse our society is. We seem to genuinely believe that if we do not talk about dying, we will somehow escape our fate. As a result, we create a whole host of problems for both ourselves and our loved ones. We do not get wills drawn up because we think we are too young or that we do not have enough money to worry about making these plans.
We fail to talk about our wishes should something happen, so when (not if) something does, the burden of difficult decision-making is placed on the shoulders of our loved ones. We make it harder on everyone involved when we avoid these critical conversations.
Nearly the entirety of Patrick’s illness was focused on staving off the inevitable rather than being concerned with what he really wanted. At every turn, the traditional medical model advocated for more — more treatment, more drugs, more tests. When did we actually stop and ask why? We didn’t. We were completely consumed with adding quantity to Patrick’s life rather than quality. We got caught up in the machine of treatment protocol, which rarely pauses long enough to consider the person behind the disease. I often wonder if Patrick’s voice was drowned out in the chaos, unable to be heard over the doctors, insurance companies, and even me. I wonder whether he would have wanted to do things differently? I don’t know because I was too scared to ask.
I realize it will require a major societal shift to start talking about death and dying openly, but that does not mean that I have to perpetuate the culture of avoidance and silence. It is my hope that sharing my experience will encourage you to think and talk about your end of life wishes, if not for your sake, then for those you leave behind.
Brain Tumor Virtual Support with Answer Cancer Foundation